11 replies to this topic

[LivingWellWithCML]

Hi everyone,

I have a question on the following comment from Trey (from another unrelated thread):

>> All these numbers do not show your true status since CBCs do not show drug response.

>> WBC can be normal yet 100% leukemic cells, and the patient would be in very bad shape.

>> What do your FISH and/or PCR tests show?  Without those test results you are going along blind.

I just started Gleevec one week ago and will be getting CBCs every Friday before my next appointment with the CML specialist at the Emory Winship Cancer Institute in Atlanta (which is May 20).  However, I'm getting these CBCs done at an oncologist's office, since it's a convenient location and the CML specialist suggested that I do that rather than make the longer trek to the cancer institute where he's based -- and they're faxing the data down to the "Mother Ship" in preparation for May 20th.  I imagine that they won't do FISH & PCR until May 20th (at the earliest), but I don't know if the oncologist near me is examining my weekly blood samples for levels of CML cells.  Should she be doing that?

So in short - about 6 weeks of CBCs, then (assuming) a FISH/PCR test at that initial milestone.  Is this expected protocol, or should I be pinging the oncologist to see if she's examining the nature of the WBCs during this period?

Thanks all -

Dan

[CallMeLucky]

That post had to do with someone who had been in treatment for a while and there was speculation that their doctor was only monitoring them through CBC over long term, which would not be acceptable for the reasons stated.  At your stage they are doing what they are supposed to be doing.  Here's some things to help

The tests they run on us are usually CBC, Cytogenetics, FISH, and PCR.  CBC is only run on blood and Cytogenetics are usually only done on bone marrow.  The FISH and PCR can be run on both.  Because bone marrow biopsy is a procedure, they try to run on peripheral blood as much as they can.

There are 3 major milestones for CML treatment

Complete Hematological Response (CHR)

Complete Cytogenetic Response (CCyR)

Major Molecular Response (MMR) deteremined by a 3-log reduction in PCR

There is also a fourth - Complete Molecular Response (CMR aka PCRu) but many of us will not achieve this, and that is ok since studies show overall survival is not impacted by this milestone.

CHR is based on CBC and you are considered to achieve this milestone when your counts go back to normal range.  Ideally you want to hit this by three months.

CCyR is based on a negative Cytogenetics report and/or negative FISH

MMR is based on a 3 log reduction of your PCR.  A log reduction is a ten fold decrease (i.e. the decimal point moves one place to the left)

If you are interested in reading about the treatment guidelines, go to http://www.nccn.org/index.asp

Go to upper right corner and click on and click login/register (you will need to register to download the guidelines, it is free)

Once you are logged in go to the "Quick Links" on the right side of page and click on "NCCN Guidelines - FREE"

Scroll down to "Chronic Myelogenous Leukemia" and click on the PDF icon to download the guidlines to your PC

You will need a PDF reader to open the document

[LivingWellWithCML]

That's very helpful - thank you!  BTW, for anyone who is interested in knowing or might already be seeing this particular CML specialist in Atlanta, here's his name.  I'd be curious if anyone has experience with him:

• Dr. Hanna Jean Khoury - Emory Winship Cancer Institute
  

He walked through those same milestones in my first appointment (at a broad level) and he did note that FISH/PCR can be effectively measured through blood draws only (vs. getting a biopsy every time).  Whew.  I even scanned the research on those methods since he did a study to measure the effectiveness/accuracy - all sounds good there.

I guess my concern is around the lack of CML-specific analysis of white blood cells from a vanilla CBC in these oh-so-early weeks of treatment.  For example, they looked at a sample from my CBC when I was diagnosed and were able to characterize CML cells vs. normal cells (under the microscope I assume?), so I'm just wondering why they wouldn't take a little extra time to look at a sample each week to see if the %-age of CML cells in the total sample might be normalizing, or increasing/decreasing -- even in the face of an ongoing normal WBC from week to week.  Perhaps it doesn't matter during the first 6 weeks of treatment?  Sorry, I know these are probably newbie concerns - I promise to be a fast learner though. :-)

And in terms of PCR - this is the same as "Ratio of BCR-ABL1 transcript to G6PDH transcript", yes?  If so, what's the typical baseline ratio (%-age) in chronic phase CML?  Is there such a thing as a typical baseline, or is it just unique for each individual's case?

Thanks for all of the education folks -- it is so incredibly helpful.

Dan

[CallMeLucky]

Never apologize, we all have to learn, I know I am still learning and very grateful to the people on this site who helped me when I had the same questions.

The thing to keep in mind with CML is the big "C" and in this case it doesn't stand for cancer, but rather it stands for Chronic.  CML doesn't do anything fast in the chronic stage, which is where most people are diagnosed.  While it is a very serious disease, it is very well understood and tends to be predictable in most people.  Its progression is well understood and initial treatment is somewhat, dare I say it, routine.  Just look at the treatment guidelines and you will see what I mean, it kind of reads like a check list.

Tests are expensive and since most people respond to the drug in the same way, there is no need to do extensive testing each week.  If counts are returning to normal that is the first thing they are looking for and it means the drug is working.  As long as the counts don't start to climb back up, then that is one milestone out of the way.  The impact at the molecular level takes longer and that is why we have to give the drug some time to do its thing.  You have likely been walking around with CML for a good couple of years now, so it takes time to get things back under control.  You literally have millions, probably billions of CML cells in the body that need to be wiped out.

I completely understand the desire to know right away how well it is working, it is hard at the beginning.  No matter how much people tell you all the things you will hear about how wonderful it is to have CML now that we have Gleevec, it is still a very difficult and scary thing to adjust to.  It gets better over time.  Hang in there; to use a relatable metaphor, this is going to be a marathon.

All the best

[Trey]

The CBCs are important to show that the high WBC drops back to normal levels in a relatively short time.  The CBCs are also important to monitor the health of the blood, but not necessarily the progress in driving the leukemia to lower levels in relation to good cells.  So CBCs are important early on in monitoring status, but has limitations.

Dr Khoury has a good reputation.

[jjg]

Hi Trey and others. I have more questions (thanks Trey for answering my previous one)

I started Glivec 600mg on the 15th of Feb and was doing 2 weekly CBC + liver.

I am 38 and newly married (on 6th Feb). If I can get a good response quickly we will try for a pregnancy. So my tolerance for side effects is increased by that (not that the side effects have been too bad).

The liver tests have bounced around a bit but never two high ones in a row. A selection of the CBC results are below (I'm missing the one from 28th March but I believe it was similar to 14/03/11). As you can see my WBC before treatment were only slightly elevated, my FISH was 18/20. I'll do a second PCR next month.

                         20/01       28/02          14/03        11/04

Haemoglobin    136            120             116            134               g/L

Hct                     0.4            0.35            0.34           0.39            

RBC                  4.3             3.8              3.6             4.0               x10-12/L          

Platelets            339            276             104            114              x10-9/L

WBC                 12.6           8.3               3.9             2.5              x10-9/L

Neutrophils       10.0           6.6               2.4             1.5              x10-9/L

Lymphocytes     1.9            0.9               0.7             0.8              x10-9/L

I'm happy that the RBC seem to be bouncing back and I can feel that as I exercise a lot. Platelets might be thinking about bouncing back. The neutrophils seem to still be heading down, but at a slower rate.

I have two questions:

1) When I saw her on the 12th of April my hematologist was happy for me to go to monthly bloods. Initially I was happy for that but when I got home and looked at the WBC numbers I had second thoughts. I had also a big increase in eye swelling so I emailed her about that and the bloods and she said it would be reasonable for me to continue to do fortnightly bloods....but I suspect she was just keeping me happy...a valid form of treatment. At this point would you prefer fortnightly or monthly?

2) Do the cell counts tend to recover from the TKI in any particular order? RBC live much longer than WBC or platelets which may mean that they are less susceptible to a short term cut in production. Aside from that I don't have any theories and I've no knowledge of how the TKIs affect production. I guess I'm wondering if my hematologist is thinking that WBC will be next to recover. She is really good at responding to emails but I don't want to wear out my welcome.

[Trey]

We all have different experiences.  But in general, platelets take somewhat longer to normalize.  Some have their WBC and RBC bounce back to normal within a few months, but many of us tend to hang around the "low normal" range for years.  But the good news is that the body can adjust to this new normal.  Your counts started out almost normal, so you may stabilize faster than many of us did.

The hard thing to hear is that exercise can help regain energy after getting through the initial few weeks when starting TKI treatment post-diagnosis.  The TKI drugs can make our muscles feel a bit rubbery, and they get tired and ache more easily.  They need to be exercised, which requires pushing through pain and fatigue.  Not easy.  But it definitely helps.

[LivingWellWithCML]

Seriously, you guys are absolute saints on this board.  Thanks for bringing this excellent insight to bear.  Knowledge is power (but hopefully without panic)!

So, I got my counts today and I'm 1.5 weeks into Gleevec 400mg.  So - this appears to be pretty common: my WBC and Neutrophils are now BELOW normal for the first time since my one-month dx, but not alarming (3.2 and 1.9, respectively).  I asked the nurse about eating sushi tonight and she suggested that I stick to cooked food.   RBC/HGB are mildly low but aren't normalizing yet (and I can feel it in my slower running).  Platlets are normal but MPV is low.

I guess the bottom line is that the counts will be a bit wacky while normal production gets going again, but we need to make sure that the Neutrophils value doesn't go below 1.0 -- then I might have to take a break from this board for fear of catching something! <grin>

I know that I'm going to keep saying this, but thanks again for the great input - it helps more than you all know....

Dan

[GerryL]

Hi jjg,

Just on your eye swelling - that is probably fluid retention, the side effect of edma is worse for us female folk. Keep an eye on your salt intake, exercise can help and if it gets too bad there are fluid tablets.

Gerry

[jjg]

Thanks Gerry and Trey.

I suspect that the eyes were the result of a very yummy Thai meal that no doubt had loads of salt. Maybe because it came up so quickly it looked bruised as well as swollen. So, being newly married and working in an almost all male work place, I got a few "helpful" suggestions at work about what to do when hubby gets out of control :-D

My doc did say that the fluid tablets don't really work on such localized swelling - my weight was essentially unchanged - and would most likely cause dehydration. I think she would offer a dose reduction first and I would be reluctant to do that at this stage for essentially cosmetic reasons. Fortuately the swelling is much less gross now and I'll be sticking to low salt food...until the yummy Mexican night next week.

[hannibellemo]

jjg,

I'd talk to him again about the fluid tablets if the edema bothers you. There are alot of CMLers on this and other boards that will tell you they absolutely work for them. I'd believe my BIFs before I'd believe my doctor. (Sad, but true!)

Good luck!

Pat

[GerryL]

Hi jjg,

I agree with Pat about the collective info on the board.

I get a bit of swelling in my ankles during the week, from sitting at a desk most of the day and I also take my Glivec in the morning. No trouble on the weekend as I am moving around a fair bit and also have a nanna nap if I am home. Thai curries tend to be a bit salt laden due to the fish sauce, so perhaps have a couple of glasses of water with it to wash the salt out fairly quickly, might work for you. I also eat a banana everyday, which helps with my potassium levels which in turn helps with fluid. I take a fluid tablet every so often, if I've eaten something which has hidden salt, or knowingly eaten some salty chips/french fries etc. I've also noted that I haven't put on any extra weight, but the excess fluid can make your blood pressure go up, which happens occasionally to me.

Gerry